Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Stupid Relatives


Lockheed

Recommended Posts

Lockheed Apprentice

Okay.. so I mentioned recently to a family member that we were considering moving to Boston. Not anytime soon, but in the future. I fell in love with Boston because it was the first place where I could ask for a gluten free menu or gluten free menu items and the waiters knew exactly what I was talking about and didn't just stare at me blankly like I'm an alien speaking a foreign language or something (which I realize if you've never dealt with the topic before that's the proper response). But Boston seems to be fairly celiac aware and savy. But recently I've been having other issues and I tend to not talk to people when I have issues because.. well I'm having issues! Like duh hello let me go deal with myself and when I'm normal again I'll come talk. So this is the e-mail I got:

"When you have spoken about your health issues and Boston being a place with the highest concentration of people with Celiac's- I have to assume that also means there are Dr.'s there who have a greater insight into the healthcare needs and have a greater instance of finding solutions that work for Celiac's. With that being said- this makes me jump to the next conclusion that you are having problems that you are SPECIFICALLY going to Boston to seek treatment for."

This makes me cringe so much. We all know there is no cure or solutions that work for celiac's except a gluten free life. I don't even want to call it a lifestyle because that makes it sound like on Saturday we can just throw our lifestyle out the window and adop a different one for the day as long as we're good with our lifestyle again on Monday. It's not a choice, it's a way of life and really I don't mind it. And why do I have to be seriously sick in order to want to move away from my crazy nutzo family (no - really... they are nutz)? And if I were going for medical treatment would I seriously be staying there for a week? I just don't even know what to say anymore.

And just for the record I didn't say that Boston had the highest celiac population.. honestly I have no idea who does, but I did say they are aware of it because there is certainly a bigger diagnosed population there than out here in the middle of no-where Texas.

Sorry.. I just needed to vent about it somewhere with people that understood. It's a diet restriction not a death sentence.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sickchick Community Regular

I am so glad you posted that! B)

I am the same way- when I feel like crap I keep it to myself and I don't whine to anyone... ESPECIALLY family.

Sorry you have to deal with that... :rolleyes:

Be well! :)

gfpaperdoll Rookie

as a Texan let me just say, that if you are in nowhere Texas & they do not think you are an alien from outer space because you are not eating peach cobbler, chicken fried steak & biscuits & gravy, you are doing good. :P

Most people in Texas are all about food & plenty of it. If your uncle's cousin's best friend dies they will bring food! People from other states might think this is an exaggeration but it is not. ;)

I have only been gluten-free for 4 years, but one thing that I have recently learned is that the less it is mentioned to family, friends, & acquaintances the better off I am. Now if I could just get where I do not stop people on the street to tell them about it!! B)

Just never mention it to your family again. Instead just talk about how you are going skiing, surfing, mountain climbing, taking up a new hobby etc etc, but never mention the food...

frec Contributor

You catch on a lot faster than I do! I've had this for 6 years and I just now came to the conclusion I should never mention it to my brother and sister. I've always tried not to mention it much (my brother tends to suddenly have to hang up if I mention health on the phone), but I think I need to lead an entire secret life they don't know about it. My brother recently told me not to bother him with my health issues. I really thought I'd been pretty good about avoiding the subject. My sister is more tolerant but still says things like, "Do you HAVE to tell the waiter you have allergies?" Then she says things like, "I didn't know pasta had wheat in it!" But then she saw me wearing lidocaine patches (fibromyalgia related) during out last vacation together and later said, "Why didn't you tell me you were hurting that much?"

So I don't get it. I think you are right--don't talk about it. They can ask if they want to know. It is tough, though, because food is a very pervasive topic. At least my friends are great.

Boston is a beautiful area--I've been there a lot.

Salem Rookie

Before I finally went gluten-free, I was gluten-light except when I went out to eat. It seemed that every time I went to a family member's house I would get sick (and grumpy). I felt like I was "Debbie-downer" so I would try to hide how sick I was. A friend of mine was so kind as to suggest that perhaps it was all in my mind. From then on, I started to think that maybe my family thought the same thing. I started a blog about my gluten-free journey, I think it has helped them understand that although being wheat-free might have been a choice before, it is no longer a choice. They are kind of understanding but are still clueless.

I try to remember that they are uninformed about the disease and aren't trying to drive me insane. When I get a phone call about a great new Gluten filled meal, I just listen and say "hmmm... sounds good." When what I really want to say is "why are you telling me this?" I think it's like telling a drug addict about a great new drug that they gotta try. Families want to share with us, and want us to get better and be "normal" again. They don't understand that being Gluten-free makes us feel normal and life is so much better.

cindy lou Newbie
Okay.. so I mentioned recently to a family member that we were considering moving to Boston. Not anytime soon, but in the future. I fell in love with Boston because it was the first place where I could ask for a gluten free menu or gluten free menu items and the waiters knew exactly what I was talking about and didn't just stare at me blankly like I'm an alien speaking a foreign language or something (which I realize if you've never dealt with the topic before that's the proper response). But Boston seems to be fairly celiac aware and savy. But recently I've been having other issues and I tend to not talk to people when I have issues because.. well I'm having issues! Like duh hello let me go deal with myself and when I'm normal again I'll come talk. So this is the e-mail I got:

"When you have spoken about your health issues and Boston being a place with the highest concentration of people with Celiac's- I have to assume that also means there are Dr.'s there who have a greater insight into the healthcare needs and have a greater instance of finding solutions that work for Celiac's. With that being said- this makes me jump to the next conclusion that you are having problems that you are SPECIFICALLY going to Boston to seek treatment for."

This makes me cringe so much. We all know there is no cure or solutions that work for celiac's except a gluten free life. I don't even want to call it a lifestyle because that makes it sound like on Saturday we can just throw our lifestyle out the window and adop a different one for the day as long as we're good with our lifestyle again on Monday. It's not a choice, it's a way of life and really I don't mind it. And why do I have to be seriously sick in order to want to move away from my crazy nutzo family (no - really... they are nutz)? And if I were going for medical treatment would I seriously be staying there for a week? I just don't even know what to say anymore.

And just for the record I didn't say that Boston had the highest celiac population.. honestly I have no idea who does, but I did say they are aware of it because there is certainly a bigger diagnosed population there than out here in the middle of no-where Texas.

Sorry.. I just needed to vent about it somewhere with people that understood. It's a diet restriction not a death sentence.

You just made my day, I feel your pain. My family doesn't *believe* in Celiac and certainly not that I'm sick. They think if the "real" doctor can't "fix" it with a pill or surgery, then it's not real. (They are very sick people- multiple heart attacks, hysterectomy, diabetes, etc ......)

Your last sentence really made me chuckle, thanks! Oh, I live in eastern NC and all the Outbacks, Macaroni Grills (scary thought), and a few other places have gluten-free menus. I did a review of Outback on my blog- their gluten-free meal was great, all the way down to the brownie. The brownie, sadly, was not dairy free however, so I did get "dairy-ied" if such a term exists :)

susanm Apprentice

Hi, I'm from the Boston area, so I had to respond. While there might be more awareness in this area, you got lucky with your restaurant. A lot of people are still very ignorant about it here.

Part of the reason I think there's more awareness here (now hear me out first) is not that there are more doctors here. Nooo, doctors aren't all that aware. It's because there is more of an alternative lifestyle here. There are a lot of chiropractors and alternative medicine practitioners. The reason I said "here me out" was not to say that celiac is an alternative lifestyle. It's just that these alternative medical practitioners are just more aware of dietary subtleties than regular medical doctors.

I go to a regular doctor that also is an alternative medical doctor too. In other words, she works both ends. First thing she had me do was an elimination diet to see what I was sensitive to. Unfortunately, there was no follow-up when I said that reintroducing the wheat bothered me, so now I have to follow-up myself.

Just giving you a little background information on Boston before you move out here because you think we're a haven of great medical information. <_<


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.